Hope is here!

Today the FDA approved the first drug that "fixes" a defective CF gene!!!!! While this drug won't be of help to Cade because he doesn't have the mutation it works on, I am beyond excited! It does help my other favorite CFer Tori and this makes my heart smile just as much. I can't wait until the prescription is in her hand. Kalydeco is like the greatest gift to the CF community in a long time! Not only is Kalydeco a major treatment breakthrough for people with the G551D mutation of CF, the science behind the drug has opened exciting new doors to research and development that may eventually lead to a cure for all people living with CF.

For everyone that has donated to Team Cade and the CFF, this is what your money is going towards. The CFF has several more drugs that they are working on now. My dreams are coming true.  A cure is coming and no one else will have to watch their children die because of this awful disease.

Welcome to our life!

Welcome to our life.I guess I should start our blog with a little background info.
Casey and I were married in 2005. I am a nurse and he is self employed. For the better part of the past 9 years, I have been a pediatric nurse. We had tried for several years to have a baby. Finally our prayers had been answered. In 2009,we had Cade. Cade just happened to be born with Cystic Fibrosis.

 New baby + chronic disease = roller coaster ride with terrified parents.

CF is a genetic disease affecting the lungs and digestive system. Basically their "salt channels" don't work.If you remember from that Jr. High science class,salt follows water. In Cf salt can't get into cells for several reasons. Therefore water doesn't enter into the cells either. This leads to sticky mucous that clogs the lungs and GI tract leading to respiratory illnes and digestive issues. There is no cure YET. The life expectency of a child with CF is 39.
The past 2 years have definitely been an experience. After lots of info, Dr. visits and online support groups,we are making our way through this crazy wonderful life. Cade has done very well. He was born with a meconium ileus (meconium blocked in the intestines) and required surgery the day after he was born. He spent 2 weeks in the NICU. He was hospitalized again at 7 weeks for pneumonia. He spent his first Thanksgiving in the hospital. Luckily he hasn't needed to be hospitalized since.

We spend a few hours each day making sure that we keep Cade as healthy as can be. He has treatments 2 times each day involving breathing treatments and CPT (this is a clapping technique used to loosen mucous in the lungs). Each treatment takes about an hour at a minimum. When he becomes sick, we increase to 3 a day. They don;t bother him...he even asks for them at times, especially when trying to get out of going to bed!
Cade is also on several medications. He has enzymes that he must take when he eats. These help digest his food. Not taking them causes tummy aches and the worst smelling poop ever! It also means he didn't absorb and fat or protein from what he just ate. Weight gain is a big issue. We fatten up everything we can by adding butter, oil and cream to it. We also use carnation instant breakfat and another type of powder to add calories. You think feeding teenage boys is expensive, try feeding a CFer!!!

I guess that sums up the beginningof our story. Hope you love watching Cade grow as much as we do!